So after waiting for years for my GP to refer me, I have been seeing a haematologist for 6 mths, 3 positive test results later, I have now got a referral to a rheumatologist!! I'm happy with this.... I've also got a referral to cardio for an echo, and I've to keep going to haematology as I'm showing abnormality linked to PNH???... Googled it as I've never heard of it, don't know what to think, they are repeating the test.....

(again!!!.... 4th time, and really bad at giving blood... Not fun!!)

At this moment, I'm not worrying as the haematologist, seems not to concerned, as two of the tests where positive, the other not.... She says that it has to be consistent , and over 50%, each time, for them to be concerned.... I'm currently below 10%.

Hi Dave, I've no idea when appt will happen, NHS dependant, so prob weeks, but after waiting this long... What's a few more weeks!!! I've been on warfarin for nearly 20years now, I've always just been told I had sticky blood, it's one of those things.... As I got older/my daughter got older, and the internet "appeared" I was able to do my own " research" and realised ... Sounds a bit dramatic, .... but there was others!!! And finding this utterly wonderful, enlightening, and supportive forum/group has given me the strength and info needed to push my GP, more so to do with my daughter, she is similar age to me when became chronically ill, and I just don't want her to suffer, anything I have been through. ( they have confirmed she needs testing!!) ..PS I live in Scotland Sarahx